Comprehensiveness, Coordination and Continuity in Services Provided to Young Children with Cerebral Palsy and Their Families in Norway

Abstract

Background: Cerebral palsy (CP) is one of the most common childhood disorders requiring comprehensive and coordinated care over time. This study aimed to add knowledge about health, educational and social services received by children and families throughout early childhood, with special attention on coordination services provided. Methods: The study was designed as a prospective longitudinal cohort study utilising data from two CP registers in Norway. Fifty-seven families with children with CP aged 12–57 months with different levels of mobility limitations classified according to the Gross Motor Function Classification System were included. Services were mapped via the parent-reported Habilitation Service questionnaire at least three times. The relationships between mobility limitations and the number of services and type of coordination services were explored using a linear mixed model and Chi Square/Fischer’s exact test. Continuity in the provision of services was explored by identifying interruptions in the longitudinal reports on services received. Results: Most of the families received both health, education and social services as well as some types of coordination services. The number and type of services received varied to some extent depending on the children’s mobility limitations. Multidisciplinary team and an individual service plan were widespread coordination services, while having a service coordinator was most common among the families raising a child with severe mobility limitations. Interruptions in the longitudinal reporting of services were frequent, especially in the receiving of coordination services. Conclusion: The comprehensiveness of the provided services emphasises the need for coordination services. The relatively low proportion of families provided with a coordinator and the frequent interruptions in the longitudinal reports on services indicate some persistent challenges in the service system.